“ I wanted to reach out to let you know I received my care package yesterday. THANK YOU! Within a few minutes of just glancing through it yesterday I have seen a lot that grabbed me. I am now sitting here reading the packet. I have it ready to carry every where I go.” - Mickey “I received my package yesterday. What a sweet surprise! I needed a mile on my face. trying to stay strong but sometimes I just break down. What a horrible disease this is. I’m afraid we have a tough road ahead of us. My honey is only 61 years old. No one deserves this!!” -Janice “I just got done reading all the information in your care package, next I will pass this along to my mom and my sister! This is great information and is extremely helpful. I’m eagerly starting the book today too! You both are doing such a wonderful job in spreading awareness and I too plan to do the same in the future. I believe my dad is in the late stage, coincidentally his name is Louie (thankfully spelled different than “screwy Lewy”). My mom had a stroke 3 years ago yet she loves to read so having this in writing is going to help her understand. I’m sure your dad was an amazing dad, it shows in all the work you are doing to help others manage this horrible disease! THANK YOU!” - Lisa “Our package arrived today. Thank you so much. It’s such a wonderful thing you are doing. I truly appreciate all of the information. Hopefully my daughters will find it helpful too. We’re all still trying adjust to this new life we have and it’s hard on all of us but arming ourselves with as knowledge as we can will help.” - Carolyn “I received you box of resources. It’s tremendous what you have done and all that you have put together. This book, is the same one that I had been eyeing. I’m thrilled to have it. I’m flying to see my parents tomorrow and taking these items with e to share. Thank you!!” - Candy “Just got my package. It is a lovely presentation. I am grateful to you. I was just planning on printing out the GEMS chart and to m delight you have included it in your folder. I am excited to share this information with my HomeHelpers. Again, thank you.” - Bo “Good Morning! Thank you again for your care package! I finally sat down and got through some and not only is it valuable information but it helped us, my sisters and I, not feel so alone. Thank you for everything!” - Amy “I just received the care package. I cannot thank you enough! I cried just browsing through the contents, it means so much that you and your family care enough to create all of this to help others. Thank you ever so much. What a wonderful thing you are doing!” - Beth

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How to Be an Advocate

Remember you will be with your LO the majority of the time.  Your LO may showtime (where your loved one acts totally normal or even upbeat) during a doctor’s visit so be sure to let your doctor know. 

  • Have more than one person at doctor visits.
  • Make sure the care team has information to glean from regarding LBD.
  • Keep a log of meds that DON’T work and those that do.
  • Take the list of meds to every Dr and hospital visit.
  • Keep a daily log of bp/bms/urinary output/activity level. Download our example log - coming soon!
  • Make sure ER staff understands the dementia that your LO has, most of the time they will not. There is a medical card that you can print off the LBDA.org website and print off extras in case of an emergency.
  • Get in touch with Compassus/Hospice which helps with more than just at the end of this journey. 

Here's What Worked for Our Family

  • Remove any items that are causing your loved one any anxiety.  It may be your favorite item in the home but removing it will help ease his/hers anxiety in that moment. (He may want it back in 5 minutes or 5 days or never but it will ease the tension.)
  • Lighting.  Some patients have visual issues and may see people, animals, etc. in shadows. Some can be frightening especially with hallucinations. See where shadows are cast and add or take away lighting in that area.
  • Old shows that are funny.  Our dads favorites were Golden Girls and Friends.
  • Music.  Any kind of music that they used to love.
  • Speaking quietly, even if they are yelling, speak quietly.
  • Remember their senses are heightened so whatever you are feeling - they are feeling.  If you are angry they will mirror that. If you are patient they will mirror that.
  • Walk slowly into the room that they are in.
  • Do NOT make sudden movements towards their face or their body.
  • One instruction at a time or one question at a time and wait for their answer.
  • If you are with your LO in a group, allow one person to speak at a time.

And no matter what…

  • L: Love them.  They can feel, not always, the love you have for them.  They may think you are someone else (Capgras) but love them anyway. 
  • O: Omit negative emotions before you walk into a room with your loved one.
  • V:  Venture out and find respite. Care.com is one place to find good help.  Make sure whomever you hire for respite has lewy body dementia care experience.
  • E: Empathy for your loved one and yourself. Reach out and ask for help as the caregiver.  Try to remember your loved one didn’t ask for this disease either. Love them, love them, love them.

Here's what Didn't Work for Our Family

  • Disagreements with ANYONE (including doctors) in front of your loved one with LBD.
  • Speaking harshly/loudly to them.

Remember whatever your feeling they will feel: anxiety, sadness, anger, etc., they will mimic your emotion.  Use the LOVE acronym.

Check yourself.  Do not let your lack of self care be the root of any added heated emotion that your loved one may be affected by. The acronym HALT is easy to remember. So if you are hungry, angry, lonely or tired - stop and get what you need to replenish so you can be of help.

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